Carers Return To Work! Yes you, go on, go ...

Well Mr Abbott, this, is a wonderful idea. I'd love to be able to accrue Superannuation, paid holidays, have a lunch break, be eligible for sick leave knowing all along, there is the back up support for my child so that I can return to the work force at the employable age of 51.

(Note: When I Googled "Employed Older Women" to find an image to insert here, I got Liza Minnelli and Julie Bishop and lots of graphs), says it all really!

There was no shortage of beautiful images when I Googled "Employed Women" however.

Gratuitous "Pretty Flowers" image

I could not think of an option more appealing than to be able to be a valued part of society again by way of a well paid work placement! Because we all know, the only person who values a Carer is the person being cared for. Mind you, when that person is your son, sometimes, they don't even appreciate it.

To be able to first and foremost, get a job with the lack of qualifications I have after 11 years at home with my child, (despite my requests over the years for hands-on support so I could stay up-to-date with training or work experience but was denied those opportunities by various Governments, due to the comparative cost), would be a bonus!

To be employed with inclusive work practises, seems like a dream come true, which will allow for the many days or part days I will need to be at home with my sick, disabled child or to attend Physio, Speech, OT, Cardiologist, Paediatric, Paediatric Ophthalmologist, Podiatry, Specialist Dental, Cleft Palate all day Clinics, Pathology, Minor procedures, Disability Parenting Training Days, Sensory Training Days and all the other unforeseen days that will require me leaving work in response to an emergency that nobody else can attend to in relation to my child, who by the way is seen to only have Moderate care needs, this list would be ten times longer for many Carer/Loved one relationships where care levels involve medical procedures. I'm assuming, eventually, the NDIS will cover the cost of all this though … 

Not to mention the Mental Health Days I'm betting I'll need as I adjust back into the work force working 18 hours, 7 days a week, being that I am an unsupported Single Parent Carer. Not only will the pressure of working those hours moving forward take it's toll, keep in mind I have previously been isolated because of my Full Time Carer role, and I can assure you, it has already done my head in.

So, Mr Abbott, explain to me again, how exactly is this going to work without compromising the health and well being of myself, my child and the underpinning structures it has taken me the best part of 11 years of begging, negotiating and manipulating to put in place to support our ever changing sets of circumstance?

Or is this just more of the heavy lifting you obviously feel us Carers have not been doing?

Grateful In April 2014 - 1st Day of Gratitude

It's that time of year again! Yes, it's April! Which means it's time for ....

GRATEFUL IN APRIL 

Just click on the link above to find out more about this fantastic project!

This time last year, I wrote this post about how grateful I was for my Education.

I sited my Happy Ending to be that I would return to study this year with the hope to go to University.

Source

I am very happy to report that I have returned to study. I am also very happy to report that I have learnt to bring some balance to my life.

Therefore, I am at TAFE.  I am studying Certificate IV in Community Service Work.

I am very happy with the course itself, I am enjoying the subjects and the people,  I am enjoying having contact with like minded people, I am enjoying once again being a person in my own right.

I go to TAFE and I am me. I am not Mum, I am not a Carer, I am not anyone's sounding board, I am not there for anyone else but me.  And I am loving it!

The balance I talk about is that I was sensible enough to have not taken on too much.

Yin and Yang

I realise how I would not have enjoyed the course as much if it were causing enough stress in my life that it had become unpleasant, I also understand I would have been setting myself up for failure had I taken on too much.

These may seem like simple, sensible things that you would imagine most people to just "get", but when you have a mental illness and your life is in turmoil and your default is to make decisions on the run, these new actions are real achievements. And let me tell you, it feels good to be able to look at what I have done, and the decisions I have made, and actually be really proud of myself.

So, this year, I am once again grateful for my Education, but I am also very grateful for my ability to learn. Two very different things.

The Happy Ending will be when I graduate from my course at the end of this year!!!

Human beings, who are almost unique in having the ability to learn from the experience of others, are also remarkable for their apparent disinclination to do so. Douglas Adams

Life Happens

HELLO!!! I am sooooo sorry I have been AWOL.

I don't have a note to explain my blog absence, however, I may be able to shed some light on the matter in this post.

So, grab a cuppa, find a comfy seat and I will fill you in ...

Once April was over and I had blogged every day about what I was grateful for, I must admit, I was a bit blogged out.  It was hard blogging every day. Not so much finding something to blog about, but the time it takes to sit down and put that into words, particularly ones that will keep my readers hanging off the edge of their seat mildly interested. The actual blogging about gratitude however is something I want to continue with once I get myself back on track as it was very therapeutic.

The couple of posts that did follow are an indicator as to where my head was as I wrote about balance in life and a situation around my youngest son LJ and school.

So yes, I have had some challenges with LJ and school. Thankfully he is at a school where the people are so committed to their individual roles and as a team, well, I call them "The Dream Team".  You see I have had much greater challenges with LJ before in relation to school, hence, I moved him when I found the right people for the job.

Sadly, however, having the right people doesn't immediately make for the perfect environment but it does help work towards that.  NSW Department of Education is a big organisation and those who are employed within that Department are required to conform to certain policies, regulations, procedures, guidelines and budgets and although their hearts are in the right place, their values are impeccable and their ideas are at the forefront of Disability Education, they are limited as to what they can ACTUALLY do.

Lets say for now though, we have found a solution that is a great compromise even with all the barriers the Department puts in the way.

MJ has had his fair share of crisis also, although a bit too personal to share here at this time, maybe one day in the future.

What I can share is a little more boring and I am sure most of you can relate to which is, Teenager/Mother communication standards 101. Wow, I thought I knew how to deal with this, after all, I was a teenager once too you know? Lets just say this whole experience has opened my eyes to who I am now.

And then there is the debate surrounding subject selection for HSC and ATAR.  Thank dog MJ has an idea of what he is doing there; I'm lost!

The school holidays are always a test for me too.  Being a single Mum and having two kids that are always presenting me with something to keep me on my toes.  Not having any family support and no access to ongoing respite makes things a bit tedious at times like holidays.

This set of holidays just gone was a little different as I did give the local Vacation Care a try.  Once again, it is about the people you deal with.  While this organisation is a Mainstream provider, they really covered all bases to meet LJs needs.  What a great job.

We agreed on a trial of one half day each week.  LJ does attend before school care with them twice a week for about an hour these days as I now have a very part time job on those days (more about that in another post) so he had become familiar with the staff and it was a great opportunity to build on those relationships.  It was somewhat of a success and therefore gives us a base to build on for the future.

I suppose while I have been in a state of heightened anxiety, finally some of the ground work I have been doing for the last 8 years has brought about some good outcomes more recently too.

I have finally been informed that I have been approved for a Respite Package (given my complete absence of family, extended family, local friends, colleagues or associates) to provide me with any level of support. That also came about finally as a result of having the right conversation with the right person to ensure my case was being given the right level of priority.

Yes, this is all very boring. It is however, my life.

I shall leave it for now and simply mention, this was written in July 2013, so you know, it took me two months to actually hit the publish button.

The reason for that ... well, life happens. :-)

Education - 1st Day of Gratitude

Today being the first day of April, I was reminded of a fantastic campaign that I took part in last year on a small and personal level.

That was Grateful in April. The next link will tell you all about it and who the founder is and all the other great stuff that she does.  So click HERE to find out more.

In short however, it is a campaign that encourages people to be grateful! Simple huh? Wish I had thought of it!

So this year, I have decided to blog every day of April with a short mention of what I am most grateful for on that day.



Today, I am grateful for my Education.

I have never been to University, I have done a few minor Certificates at TAFE and I have a few others left unfinished for various reasons.

Despite my lack of "Formal Higher Education", I am lucky I have an Education at all, and for that, I am grateful.

Without it, I would not be writing this blog, I would not have the ability to advocate for my children, nor read to them at night.

I am truly grateful for my Education.

My Happy Ending will be when I go back to studying next year in the hope to obtain a Bachelor of Arts with Majors in Sociology and Psychology, no matter how long that takes!

Education is a progressive discovery of our own ignorance.
Will Durant

World Down Syndrome Day

Well here we are March 21st! Another opportunity to "spread the word" about Down syndrome has arrived and I ask myself, "Am I doing enough?". I think not. And it is not for lack of trying.

My son LJ is 10 years old, and for most of his life I have had to fight to have him enrolled, included, Educated, noticed or simply treated by a medical provider who understood his disability. I have had to advocate for the rights that are legally his and yet at times are so illusive. And it is not always about people ignoring the laws that exist, it is about lack of knowledge of Down syndrome itself, which I am then required to impart, ONE. PERSON. AT. A. TIME. It is exhausting!

LJ as a very cute baby

Social media has made connection with others so much easier in the last decade, the reduced cost of distributing information has made it more accessible for most people to "tell their story" or "send notifications", but are we using these methods wisely? And, are they even effective? Again, I think not. Well, at least not for this cause.

When we are talking about "AWARENESS", we are talking about real people, and yet, the Internet takes away the personal contact aspect that is the crux of the matter when it comes to inclusion and acceptance. It becomes "yet another story".  How can we make that shift?

I not only have this blog, I have Twitter, (370 followers) @s_lynn4 for anyone who might be remotely interested, which is where I keep up with what is going on in the world via news networks, other blogs and common interest groups, I also use it to advertise my blog.

But, telling my story to just 370 people is not really going to change the world! And THAT, my friends is what we are really saying we want to do when we talk about things like inclusion, acceptance, awareness, advocacy etc. Because in this world, the one we really live in, it does not exist to the extent it needs to, because those things come about as a result of interactions with other people!

WE NEED TO CHANGE THE WORLD! (Insert maniacal laugh)

So if we all subscribe to COMMON INTEREST GROUPS on Facebook, Twitter and blogs, in essence, we are actually missing our target audience.

We need to be connecting with PEOPLE WHO ARE NOT INTERESTED!

THOSE, are the people we need to be targeting with all the education!

How do we do that? Glad you asked :-)  We ALL know someone who is NOT INTERESTED!

Your brother in law, the TAFE Teacher; Your Aunt, the University Lecturer; your neighbour the Doctor; your Local Member, The Politician ... you get the picture right?

I have a grand plan, as always.  I don't seem capable of thinking small, which is why often, my plans don't take off, they are too big for one person!

And therein lies the key ... I am a part of a World Wide Community, because I have a son who just happens to have Down syndrome!

I have my 370 give or take people whom I can reach via the Internet and Twitter, and, I have people I know in real life who, would also have their own networks and so on, much like a pyramid scheme!

Now I am not suggesting we do anything illegal, as there will be no money changing hands, but why do we not use these networks better? And why do we now in this age of Internet, rely ONLY on Internet?

Down syndrome education is about people.  People who have Down syndrome, people who go to school with them, who work with them, who go to the same church, who are in the same Theatre groups, people who teach them, provide them therapies, who treat them medically people who are face-to-face with the people who have Down syndrome, which is where real inclusion, acceptance and advocacy counts, face-to-face, with real people.

While I have seen some great ideas like Lots of Socks, they involve individuals educating individuals about the intricacies of Down syndrome. From my experience, once you have shared one fact with a person, their eyes glaze over and they just sit blankly, staring while you talk about a subject which is close to your heart.  Much like a teenager having a "conversation" with a parent.

OR, you have the "I know everything about Down syndrome" group, telling you that you are too sensitive because you are trying to set the record straight on a generalisation such as "they love to hug". I'm here to tell you ... don't get too close to LJ, he's NOT a hugger.

Or the language Nazi haters, I am a language Nazi and believe me, people don't like to be reminded that my son has Down syndrome! I have tried to tell people before about the correct language, here for example. I digress, how unusual ...

Inclusion and acceptance need to be modelled. LJ has attended schools where the support units were an unknown entity to the rest of the school! The other kids wanted to know one day "What's wrong with him?" Heart breaking, and NOT inclusion! There, there is one starting point.

LJ now happens to attend a school which is moving forward in their programs of inclusion and they have happily agreed to send a flyer home to every family in the school which simply tells them "Ten things people with Down syndrome would like you to know ..." (and they are doing that TODAY, on World Down syndrome Day) which, for a Primary School is perfectly appropriate. (see below for those ten things).

Here is a link for you all today that simply outlines What is Down syndrome.

We need to educate from the top to make it easier for Parents to talk to Children, for Teachers to talk to Students, for Government Departments to talk to their front line service providers (Police, Ambulance, SES, Fire Fighters), for Lecturers to talk to our future Doctors ... YES Our Future Doctors!* For Educators to talk to future Disability Industry Service Providers**, and so the list goes on!

We need to get back to campaigning for these things on a greater scale and in real life to the ones who ARE NOT INTERESTED.

So write to and talk to your politicians, Department of Education, TAFE, University, Neighbours, Government body, implore them to include PEOPLE based disability training in their Curriculum, not just what they might need to know medically etc, encourage them to learn more about the person who has Down syndrome and their likenesses as well as the differences, because they are as alike and as different from each other as the rest of us. Tell them to involve their local Down Syndrome support group (so they get their facts right). I challenge you to get on board!

Today, well, I am hosting a Morning Tea - T4321, which of course you all know what that stands for right?

I want everyone in the world to know that the people I love who happen to have Down syndrome, are as much loved and valued as the people you love and value.

LJ as a very cute toddler

My Happy Ending will be when I don't have to explain to someone why LJs speech is not so easy to understand, or why he can do the splits without even trying, or why he looks a bit like the other boy in his class that also has Down syndrome.

But my Happiest Ending of all will be when someone asks me, "Does LJ like to play sport?" because he does, he loves basketball, swimming, soccer, Tball and running, just like any other 10 year old boy.

"Our lives begin to end the day we become silent about things that matter." Martin Luther King

*I had a Doctor interrogate me for 20 minutes when I took LJ at 6 weeks old because he had a cold, as to what I might have done during my pregnancy to have caused LJ to have Down syndrome. He asked me if I had smoked or consumed alcohol "because you know they are contributing factors?" While rationally I knew that was not true, I found it hard to believe he did not know what he was talking about, and while I did neither of these things, I was devastated that I MIGHT have done something!

** You would think it is part of their training. I had a disability worker ask me what disability my son suffered from.  I told her he had Down syndrome, but he suffered from peoples ignorance!

Ten things people with Down syndrome would like you to know. . .

1. People with Down syndrome have an extra 21st chromosome but the regular 46 we all have are there too. They are as alike and as different from each other as the rest of us. Although people with DS may share some common facial features, they share more in common with their parents in both looks and personalities than with others who have Down syndrome.
2. Contrary to myth, most people with Down syndrome are born to mothers younger than 35. Down syndrome is not caused by anything their parents have or have not done.
3. Every person with Down syndrome is an individual, with an individual personality, likes, dislikes, abilities and needs, just like the rest of us.
4. People with Down syndrome enjoy their lives when they are well supported – like all of us. One cannot assume they are ‘a victim of Down syndrome’ or ‘suffer from Down syndrome’. They are not a ‘Down syndrome person’. They are a person, who happens to have Down syndrome.
5. Down syndrome causes disability, but it is not an illness. Some people with Down syndrome do have health problems, and are entitled to the same quality health care as everyone else.
6. Learning starts at birth for children with Down syndrome, just like everyone else, and doesn’t stop.
7. Children, teenagers, adults with Down syndrome all have feelings, thoughts, ideas, interests and dreams. They know what they want from life - friends, relationships, work, leisure choices and a measure of independence for a start. With support, people with Down syndrome can live interesting, fulfilling independent adult lives.
8. You may have difficulty understanding the speech of some people with Down syndrome, though they are usually excellent communicators. Their understanding is usually better than their speech. Some do have a lot to say!
9. You’ll find people with Down syndrome working successfully, with varying degrees of support, in retail, offices, child care, hospitality and gardening to name but a few occupations.
10. In 1960 the life expectancy of an Australian with Down syndrome was ten years of age. Today people with Down syndrome live longer lives than ever before – most will live into their 50s and 60s. The oldest person with Down syndrome on record was 85 when she died in 1998.

For more information for Parents, Students or Professionals here are some helpful links:
 Down Syndrome NSW
Down Syndrome Association of Queensland Inc
Down Syndrome Ireland
Down Syndrome Education USA

Try Google for a Down Syndrome Association in your country